Whose Planet Is It Anyway?

Wednesday, October 11, 2006

Social Interaction and Cure

I wrote a post in September about defining curebie-ism, in which I said that a parent's attitude toward his or her child determines whether that parent is a curebie, rather than the choice of any particular treatment or therapy. At the conclusion of the post, I wrote, "If you care whether your autistic child thinks you are a curebie—you're not one."

Wade Rankin responded by pointing out that all parents have to make choices that will change their children's development in one way or another, regardless of whether the children approve. At first glance, that seems like a sensible enough point, and one that is true whether or not a child is autistic. When you stop a toddler from wandering away, for instance, you don't worry about whether you're stifling her adventurous spirit. Parents are constantly shaping their children's personalities by making everyday decisions; it would be impossible to do otherwise.

I gave the question some more thought after reading Tera's recent post about the attitude shown by Alison Tepper Singer (of Autism Every Day infamy) toward her daughter and the idea of cure. Singer opined that her daughter had no abilities and that there was no reason to be concerned about squashing the child's natural personality. That's curebie-ism at its worst: a total lack of acknowledgment that an autistic child even has any feelings and thoughts that are worthy of concern.

Most parents who talk about "curing" their children are not in that category. They're not trying to change their kid into a completely different person, they say; rather, they just want the kid to have more ability to communicate and interact with society. While that's a reasonable goal in itself, sometimes it seems as if these parents overlook the fact that their autistic children already are interacting with society. Wade's post, for example, describes how he imagines his son, if "cured," might behave:

Why, my son asks rhetorically, did I ever think it necessary to “cure” him; did I consider him “defective?” Without waiting for a response, my son storms out of the house and walks outside to his waiting friends, to whom he complains about how I just don’t understand him the way his friends do. If my son would only look to the front window of the house, he would see me peeking out from behind the curtain, listening to him interacting with his friends. And he would see me grinning from ear to ear.

Wade, I have to ask: do you really believe that autistic teenagers have to be "cured" before they are capable of interacting with friends and complaining about their parents? Because if that's what you believe, I take it you haven't looked at the Aspies for Freedom (AFF) forum recently, or any of the other websites where thousands of autistic teens are venting—quite vociferously indeed—about how society and their parents have treated them. And they're not "cured" by any stretch of the imagination.

Before I go any farther on this topic, I want to make it clear that I do not share the attitudes I'm about to discuss. My parents always respected my individuality and treated me as a worthwhile human being; I have no grudges against them whatsoever. I also don't intend this post to be a personal rant against Wade or any other parent who has expressed a desire to "cure" a child, but I feel that it's necessary to bring certain unfortunate facts to their attention.

In the decade since the Asperger diagnosis came into common use, large numbers of autistic youths—mostly male—have grown up feeling profoundly alienated from society. Many of them spent their childhood sitting in segregated classrooms, swallowing daily doses of behavior control meds, going from one therapy to another, and hearing themselves described as tragically defective sufferers whose existence should have been prevented by means of prenatal testing. They are full of rage and despair at a society that they believe has not only rejected them utterly, but has also turned their parents against them. This is not the typical teenage angst that many of us remember, nor is it an irrational creation of disordered minds. It is a corrosive, soul-crushing despair that has grown out of actual experiences.

The following poem by "kai," recently posted on the AFF site, illustrates the raw depth of such feelings:


it's hard for me to sleep...i fear my dreams
it's hard for me to live..i fear my life
i fear feeling too much
or at all
even the happy feelings bind with strife
and all the joy is tainted with a sting
and all the light is faded with a gray
all the drugs are based in an addiction
and hopes that they could take the pain away
and if somebody feels we call it crazy
and if i feel i tell myself to stop
if i dream i wake up kind of shaky
and if i live i tell myself to not
then i run somewhere i haven't been yet
and promise things will turn out right this time
take another pill to make it better
and find myself inside this paradigm
everywhere i go i build with dreams
and the dreams are everything i couldn't be
those dreams become a prison that i hide in
and that prison that i hide in
becomes me

Amy and Gareth Nelson, the administrators of AFF, have repeatedly stated that they do not advocate, and will not condone, any violent or illegal acts. But sometimes their efforts remind me of the story of the little Dutch boy with his finger in the dike, trying to hold back a flood. They had to talk one guy out of a suicide terrorist attack on the Judge Rotenberg Center. Someone else posted that he was thinking about immolating himself to protest society's abuse of autistics, like the Buddhist monks who committed suicide during the Vietnam War. And this was posted just yesterday, in reference to what could be done to stop eugenic abortion:

A bit of C4, some matches for the data, and some .50 cal bullets for the researchers will do the trick.

Frankly, I'm surprised that there hasn't been any terrorism committed by autistics. If any other minority group were this close to genocide, there's no doubt a "liberation army" would consider itself morally justified in fighting back by any means. Although autistics are often considered to be more analytical and less emotional than the general population, we do have a broad range of personality types, and not all of us have a natural inclination toward calmly seeking peaceful solutions.

I don't advocate or condone violence either, and I really hope it doesn't happen. (Edited for more emphasis: If anyone reading this post has been thinking about committing a terrorist act, DON'T DO IT.) But we need to face the fact that we now have a social minority underclass of angry youths with little or no hope for the future, who grew up being treated as damaged goods and who are likely to remain unemployed because of discrimination; and historically, that always has been a recipe for disaster.

Wade—I don't know anything about your family situation, and I am not claiming that this is how your son feels. I wouldn't presume to suggest that, and for both his sake and yours, I hope it isn't so. However, under the circumstances, it's likely that when he starts complaining about his life to his friends, you will not find that to be an occasion for "grinning from ear to ear."

I recommend reading the short story "Poor Little Black Fellow," written by Langston Hughes and published in 1934 as part of the collection The Ways of White Folks. It's about a young African-American man who travels to Paris with the well-meaning white couple who raised him. For the first time in his life, he finds himself in an environment where he is seen as a human being like everyone else, rather than as a "Negro." When he decides to stay in Paris, his foster parents are dismayed, believing him to be ungrateful for failing to appreciate their efforts to help him deal with his disadvantages and make the best of his status in American society.

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  • Most parents who want to cure their autistic child want a 'normal' child. Someone they can show off to their friends and neighbours. In my views, parents holding such a view need to be cured of their vanity.



    By Blogger Julaybib, at 11:30 AM  

  • It's really amazing how the "curebies" paint autism. If the child can't talk at 2 and is able to be rude to people at 12, he's cured.

    In the (heinous) book "Evidence of Harm" (which could be written about the effect of all that pressure on autistics, you just described... the thoroughly blind and idiotic, Lyn Redwood, gives evidence that her PDD,nos dx'd toddler has grown into a typical pre-teen--

    He was rude to a clerk at a video store.

    He called up a girl he had a crush on and talked to her on the phone.


    We don't know what the girl thought of this. Autistics can be quite rude, whether or not they realize it. This is proof that he's a normal kid?

    I've seen her kid on video from a time a year or so after those incidents she described. He is so fully PDD,nos it's not funny. He's cute. But he's so not normal he's off the charts unacceptable in the sense that typical teens would not accept his "quirks."

    He's bizarre and really embarassing when compared to a typical teen by their standards, but he's precious and wonderful compared to who he is, an ASD teen. His odd hand and arm movements and odd prosody and child-like speech are perfectly understandable if he's an ASD teen. He'd be shredded alive if he tried to fit in with a bunch of angst ridden, spoiled, typical high-schoolers.

    Which is not to say that no peers would ever accept him, he might find some accepting friends, but it's not like he's typical by a long shot.

    However, his whole identity is used as proof that biomed works to cure autism (he never had "classic autism"). He's mom's biomed trophy as well as her beloved son. Mom sees what she wants to see, a kid who can pass for normal. But he does not pass for normal. He ain't passing for normal any time soon.

    Wade might end up in Lyn's shoes with a kid who only knows that he's not supposed to be autistic. That his parents wish is for him to be the least autistic as possible, and the goal is to be totally typical.

    It is a recipe for disaster, in my opinion.

    By Anonymous Anonymous, at 12:19 PM  

  • Speaking of Lynn Redwood, I know a teen, age 12, with a diagnosis of Asperger's. I think he's more accurately PDD-NOS. He's very shy, no eye contact, hardly speaks. And yet, he's got a girlfriend, age 11, for real. The girlfriend is very social, and she's the half-sister of an autistic boy and has an Aspie grandparent. It's amazing how fast these autistic kids are growing up these days. Can you guess how old I was when I had my first girlfriend? When I was 12 I probably had rather died than spoken to a girl.

    By Anonymous Anonymous, at 1:26 PM  

  • A blind man/woman who is taught braille is 'cured' of their incapacity to read.

    That's not true. Most blind people would strongly disagree.

    By Anonymous Anonymous, at 1:43 PM  

  • What I'm saying is: someone who is blind and is taught braille can now read, something they previously couldn't do.

    Sure, but you equated teaching this skill with 'cure'. You said 'cure' is relative to the disability. You are clearly arguing 'cure' is good because accomodation of disability is the same as 'cure'. We got that. It won't fly.

    By Anonymous Anonymous, at 2:40 PM  

  • Joseph,
    I think I can sort of relate to what you said. I was 36 when I had my first real date. We married 6 monthes later. Weve been married now for 5 years. So much of our successfullness at being married has to do with her learning about my differences as a person with autism. She would not have been able to really read alot about that 20 years ago.
    I couldnt have really explained much of it either. She loves alot of things about me that are autistic traits.She says she wouldnt want me to be any other way. As an autistic person, I cant tell you how much that means to me.
    ABFH, another good post. This stuff you are writing is very important. I must admit the zebra and alligator thing went right over my head. Anyway, keep writing. This stuff is great.
    Thanks, Ed

    By Blogger Ed, at 3:01 PM  

  • i have an aspie wife and aspie kid and a five month old, and I'm not normal. I have seen seen withdrawn people and not so withdrawn. I've seen really magnificent people with decent hearts who claim to have "challenges" in their life. I have seen people with everything stacked against them succeed where average people fail BECAUSE they have learned to try harder. And that really pisses off the average people. I have taught people with developmental disabilities who were far better people than most. What the hell does normal mean?

    The idea of "normal" exists, but there is such a range of characteristics and abilities between individuals that nobody fits in a box. There are characteristics which are unique to autism which I love. I love my kids. If they have problems, autistic or not, I don't say "You were born wrong." I say. "You are wonderful." And I try to help.

    By Anonymous Anonymous, at 3:08 PM  

  • Curing blind people? If you can't see you can't see. You learn to live.

    Blind people learn braile. Deaf people learn sign language. People live. There is no way to cure life.

    There are no "incomplete" people. You don't "cure" a black man from being black in the southern US. The only thing that really needs curing is social attitudes to difference.

    By Anonymous Anonymous, at 3:16 PM  

  • I'm so happy you wrote this. These things have been on my mind a lot, too, but I could never say them so well or so diplomatically as you have.

    I've sat here and re-read the poem you posted about 10 times--it chokes me up and makes me cry, here I sit wiping tears. That is the most powerful piece of writing I've seen for a very long time. I hope that boy/man is ok. He wrote something VERY VERY VERY VERY important, but I wish so much he didn't have to, bless his heart, I ache for him.

    (And to Ed, I'm glad you posted here, I've never seen your blog before, and it's really good reading. Working my way through it now, you have many very interesting things to say :-) )

    By Anonymous Anonymous, at 6:35 PM  

  • I think that several people are confusing "cured" and "enabled". A Deaf person who learns to sign or a blind person who learns braille have been enabled to communicate and to read, respectively. Other sorts of ways of dealing with disabilities aren't cures -- the condition is still there, it's simply not (so) disabling any more.

    Some handicaps are not intrinsic, but are wholly artificial because they are socially created.

    By Blogger Unknown, at 7:49 PM  

  • When you are pregnant with your child, you dream about what that child will become. There are no guarantees, just hopes.
    Unfortunately, most people have a definition of normal. Normal is whatever you want it to be.
    I have come across many people who are unsatisfied with their children. I feel sorry for these children. I feel sorry they have to go through life with parent's who wanted better.
    I know in our home, we are so proud of our children. They have become better than we would have ever imagined.
    To Jonsmum,
    You do no know me or my family. Do not hate what you have no idea about. Because I accept my children and can raise them to be wonderful, do not berate me for that....shame on you.

    By Blogger Mom26children, at 9:39 PM  

  • If you were a hearing person amongst a group of deaf people who knew sign language then the hearing person would be disabled. If you turned the lights out then the sighted person would be disabled and the blind person would be enabled. Therefore "disability" is a social and circumstancial construct.

    And as for the "average person" being pissed off if a person of difference achieves over them it is not a cynical assumption. It is a practical observation that some do. Disabled people achieving messes with the status quo and throws the whole concept of "normal" off. Of course, Jonsmum, you never feel that way, do you?

    By Anonymous Anonymous, at 2:01 AM  

  • Plus! Helen Keller who was BOTH blind and deaf was a teacher and a wonderful writer. Most "average" people cannot achieve so much.

    Plus!!!!! Albert Einstein was probably Aspie and certainly not normal.

    Plus!!!!!!!!!!!!!!!! Richard Feynman (and I have no idea if he was Aspie but probably not) who was a great scientist and a fantastic bongo player and had a marvelous sense of humour was failing his humanities courses at Yale. Point is: None of these people are NORMAL. And placed in a different context all of them might be considered "disabled".

    By Anonymous Anonymous, at 2:36 AM  

  • Jonsmum,

    I can pass for "normal" if I try, but I don't enjoy it. I wonder if you can understand why I would not enjoy passing for "normal" if I could. Answer this question for me: Why is it more satisfying for me to achieve things in my life and relain who I feel I am than to achieve things in life and feel like I am pretending to be something I am not?

    I will tell you my opinion why I think neurotypical people are pissed off at someone who is able to maintain a sense of identity and still achieve. Most people in our modern society feel they have to assimilate with everybody else (play the social game) and have no personal identity in order to comfortably get through life.

    By Anonymous Anonymous, at 3:32 AM  

  • I think it is that the bulliesare not numerous but stand out and make an impression. The rest are just passive and stupid. There are very few people who even know how to like you as you are.

    By Anonymous Anonymous, at 8:17 AM  

  • "Frankly, I'm surprised that there hasn't been any terrorism committed by autistics. If any other minority group were this close to genocide, there's no doubt a "liberation army" would consider itself morally justified in fighting back by any means."

    Kev said:"I think its necessary to point out that this hypothetical group would be utterly and totally wrong in that belief."
    Weasels might think that way, Kev. People with just a little bit of guts will stand up for their rights and fight like hell. The thing you all don't get is that you are fighting the wrong opponent. Kev is one of your enemies as he defends the companies who poisoned you into autism. If any of you had a brain in your head, you'd be fighting against the CDC, FDA and Eli Lilly who caused your disabilities.
    If Kev was leading the African Americans in the 1960's, they would have been returned to slavery. Kev and Kathleen would have been celebrating their second class citizen condition. Estee Klar would be celebrating the joy of slavery.
    Wake up!

    By Blogger John Best, at 11:44 AM  

  • And Foresam is an example of one of those evil bullies we were talking about. Thank you, Foresam, for presenting yourself as a bad example.

    By Anonymous Anonymous, at 12:13 PM  

  • Neuro Diver;
    As usual, you can hurl insults but you fail to address anything I said. You should sign up for deprogramming so you can learn to help yourself.

    By Blogger John Best, at 1:09 PM  

  • I strongly agree with Kev that violence would be the worst path possible. Violence like that has already been done by some in the anti-abortion movement, and it hasn't helped them at all. If anything, it has hurt their cause.

    If something like that were to happen, don't be surprised if they start persecuting and locking *all* of us up, not just the perpetrators.

    So it's important to nip those ideas in the bud while autistic abortion clinics don't exist yet.

    I think we need to look at the tactics of the civil rights movement instead. Or to someone like Gandhi.

    And BTW, in the abolition movement, the civil rights movement, the gay rights movement, the women's rights movement, and others, there were those who stood with and shared the views of the affected minority and those who stood against them. We have an example of the latter above, with an obviously confused view of what these movements were about.

    By Anonymous Anonymous, at 1:27 PM  

  • Camille: Maybe some parents imagine their kid is "cured" because he goes into a mainstream classroom where the teacher doesn't know a thing about autism, and if the kid is doing his work and not causing trouble, the teacher will talk about what a nice, smart boy he is, and his autistic quirks never get mentioned.

    Ed: I'm glad your marriage has been so successful! As for the zebra stuff, it doesn't make sense unless you're familiar with the comic strip and the two articles that I was parodying. Sorry if I caused you any confusion. (And thanks for mentioning my site on your blog!)

    Jonsmum: Giving a child a hearing aid would not be vanity unless the parents' goal was to make the child appear more socially acceptable. (BTW, in the Deaf community, parents often fit their children with hearing aids in the early years and then allow the children to decide whether to keep wearing them. Some children choose to stop wearing the hearing aids because they want to be Deaf like their parents.)

    Mum is Thinking: Yes, that poem is a heartbreaker. I also hope the author will be OK someday.

    Kev: I didn't mean to suggest that AFF is a den of terrorists -- they're not. They have deleted posts and banned people for inciting violence, and I expect that the post I quoted will be removed when a moderator notices it's there (if it hasn't been removed already). I wasn't trying to bash AFF, but to show that there are some young autistic men who have been "interacting with friends" in ways that are very disturbing.

    You and Joseph are absolutely correct that we need to speak out very strongly against dangerous ideas like that, and I've edited my post for more emphasis on that point.

    By Blogger abfh, at 3:26 PM  

  • Fore Sam wrote:
    ""Frankly, I'm surprised that there hasn't been any terrorism committed by autistics. If any other minority group were this close to genocide, there's no doubt a "liberation army" would consider itself morally justified in fighting back by any means."

    Kev said:"I think its necessary to point out that this hypothetical group would be utterly and totally wrong in that belief."
    Weasels might think that way, Kev. People with just a little bit of guts will stand up for their rights and fight like hell. The thing you all don't get is that you are fighting the wrong opponent. Kev is one of your enemies as he defends the companies who poisoned you into autism. If any of you had a brain in your head, you'd be fighting against the CDC, FDA and Eli Lilly who caused your disabilities.
    If Kev was leading the African Americans in the 1960's, they would have been returned to slavery. Kev and Kathleen would have been celebrating their second class citizen condition. Estee Klar would be celebrating the joy of slavery.
    Wake up!"

    It sounds to me like John Best who has admitted that he thinks he's on the spectrum went to AFF and posted that stuff about bullets used on researchers. You can see how Best using his "Fore Sam" persona is trying to incite readers to use bullets on various gov't employees and researchers, those that Fore Sam sees as the "enemy." Why wouldn'the start by posting as an angry young man on AFF?

    Even if it's not John Best Jr, of New Hampshire who posted to AFF the words describing violent actions toward eugenicist reserachers... John would love to see some poor ASD kid make the news as violent then John will Rush forward and say that the kid wouldn't be violent if only Kev and others hadn't stood in the way of the kid being chelated.

    No matter how you slice it. John Best Jr is a sick puppy.

    By Anonymous Anonymous, at 10:50 PM  

  • Jonsmum: I wasn't accusing you of vanity (or of anything else). There really are some Deaf activists who believe their parents were vain for fitting them with hearing aids and insisting that they communicate through speech, when they would have preferred to communicate through signing and writing.

    As for being a curebie... if your philosophy is to help a young child learn to communicate, and then to give him a say in his own therapies when he is able to express his wishes, I think that puts you on (or very close to) the neurodiversity side.

    Man in Black: I wouldn't be at all surprised if the real men in black (that is, the FBI or the Homeland Security guys) decided to take a closer look at his advocacy of shooting government employees. However, he is not the person who was inciting terrorism at AFF.

    By Blogger abfh, at 11:41 PM  

  • Jonsmum -"I'm a curbie and proud of it!"

    It seems like I have been seeing a trend lately to not want to "pollute" ASDs with any co-concurring conditions like bi-polar or OCD.
    Recently another "curebie" actually advised someone against against having a child evaluated for OCD even though the child is exhibiting classic OCD behaviors. I honestly couldn't think of why someone who was into using all kinds of treatments for autism would tell someone else with a kid on the spectrum to not look into this - even though the school mentioned it also. Then I wondered - OCD has a very long history - well before 1930 and is not caused by mercury. So if a kid with an ASD gets a diagnosis of OCD also than that kind of gets in the way of the genetically pure kid who was damaged by thimerisol theory. So sometimes I
    guess "curebie" doesn't necessarily apply to everything.

    By Anonymous Anonymous, at 11:48 PM  

  • "Cure autism?" It is a matter of perception.

    WE don't even know what it is. Genetic... environmental? It carries all kinds of symptomatic conditions, digestive, perceptual, cognitive, social.

    If we deal with the gluton intollerance, if we can focus and multitask, if we can find a way to get assistance for our needs, if we find a community of people who have learned to deal with their issues and still be an individuual, then why do we need curing?

    How many people have gone through life wishing there was a magical pill they could take and suddenly all would be all right. Well, I am sorry people. I've been tested. I have asked people what they dislike about me and got no answer. I have wondered why I work so hard and then evil bastards just pop out and tried to destroy everything I have done because they percieve difference. We are what we are. This is our life.

    This is what we have to live with. You don't cure of who I am, and you don't cure me of all the things I have achieved in the face of insurmountable odds. I hold my life up as a sign of victory against adversity, not as a mistake or something that needs to be cured. Nietchze said if it doesn't kill me it makes me stronger. Well, I am still here, and I am angry at all the assholes who would like to cure me of my "difference". Well I have no problems with a better digestive system, but if "cure me" means I am supposed to hide and not fight agaist the social adversity that got me here.

    People like Foresam and Jonsmum can cure themselves of their fear hatred and misunderstandings. But don't you dare insult me by saying I - the very "I", the thing which defines me - needs curing.

    I am me, and that's as good as it gets.

    By Anonymous Anonymous, at 4:27 AM  

  • Even if it's not John Best Jr, of New Hampshire who posted to AFF the words describing violent actions toward eugenicist reserachers... John would love to see some poor ASD kid make the news as violent then John will Rush forward and say that the kid wouldn't be violent if only Kev and others hadn't stood in the way of the kid being chelated.

    No matter how you slice it. John Best Jr is a sick puppy.

    Who can spot the flaw in this logic? I'll help. If the kid was cured, there would be nothing to rush forward about.
    Anyone watch Boston Legal lately? Would "Hands" need his doll and a sex therapist if he had been cured? Would he be a happier guy if he could pick up a woman in a bar and take her home instead of playing with his doll? I rest my case.

    By Blogger John Best, at 9:41 AM  

  • Foresam, anyone can be violent. Neurotypicals, too.

    Aren't you the one who is trying to teach your kid to box? Isn't the right to bear arms in the American constitution.

    So it seems that violence is inherent in the US and also in you. How is curing autism supposed to get rid of that violence if it is neurotypically based. You may not be a sick puppy Foresam but your arguments are really stupid.

    By Anonymous Anonymous, at 12:34 PM  

  • PS: Picking up women in bars is a cultural stereotype, doesn't really work unless you are acertain type of of person, often a good looking sleezeball, and the women you get might be highly suspect health wise - meaning promisquous - and you would not want to have a longterm relationship with such women.

    It is possible to meet women but Foresam has it wrong and that was an insight into his personal life which left me feeling icky.

    By Anonymous Anonymous, at 12:40 PM  

  • Neuro Diver;
    Since I served in the military, I don't have a problem with bearing arms or fighting. If it wasn't for people like me, you would not be living in a free country now.
    With your opinion of meeting people in bars, I'm glad I never met you in a bar. Long term relationships are not usually the goal there.

    By Blogger John Best, at 12:55 PM  

  • Ah, so you like to pick up guys in bars. I'm glad I didn't meet you in a bar, too.

    But now we are getting further into your personal life and I really am getting ickked out.

    By Anonymous Anonymous, at 1:18 PM  

  • ND;
    You talk like a female.

    By Blogger John Best, at 4:33 PM  

  • FS,

    What a sexist thing to say. You talk like a moron.

    By Anonymous Anonymous, at 5:40 PM  

  • Definitley not the first time John's been surprised to discover a chick is packing more than he expected.

    By Anonymous Anonymous, at 7:26 PM  

  • ND;
    It's not my fault you're effeminate.

    By Blogger John Best, at 10:51 PM  

  • Well, I guess I'm flattered that you thought my words merited a response. And I certainly appreciate the measured tone, but you're quite correct when you say you don't know my family's situation. Moreover, you don't know what interventions my son needs or what progress he has made as a result. As for the potential that the Little Rankster might resent his parents as a teenager, that is not an altogether unhealthy attitude for a teenager to have. On the contrary, it often denotes a growing independence of spirit.

    Finally, although I am more a fan of Langston Hughes' poetry than his prose, I am familiar with the story you described. I am always left a little bewildered when someone attempts to draw an analogy between the civil rights struggle by and for autistics (something I have no real problem with by the way) with the ongoing civil rights struggle by and for African Americans. Ethnicity is neither a medical condition nor is it related to a medical condition. I realize I am opening up the central debate many of us have as to where autism ends and comorbidities begin, but I simply do not believe that a child has the civil right to refuse medical treatment his parents determine may be necessary (subject, of course, to considerations of safety, which opens up another debate I suppose).

    I'm still not sure what constitutes a "cure," or just who needs to be "cured." But I know my son needs help before he can have the opportunity to enjoy a fulfilling and independent life of his choosing.

    By Blogger Wade Rankin, at 11:04 PM  

  • Wade;
    You have to embrace the autism and celebrate the diversity. It might help if you take two tabs of LSD and smoke an ounce of weed.

    By Blogger John Best, at 11:29 PM  

  • FS,

    Take a walk on the wild side, Honey.

    By Anonymous Anonymous, at 1:08 AM  

  • Wade,

    I am sure you are aware that there are digestive, perceptual and developmental issues with children with autism. There are also issues which have to do with aspects of personality. The symptomatic issues do not make up the root of what autism is. And a person is not autism. A person is a person.

    My wife and my child are both autistic. They are inteligent, they are extremely focussed on some things and not so focussed on others. They are stubborn. In some areas they are not affectionate and in some areas they are very affectionate. Which of these are aspects of autism and which of these are personality characteristics and is it fair to define the way someone IS by a medical condition.

    For myself, I had problems in my past and I worked hard to overcome those difficulties. Does that taint my achievements. Do I now say "Well, I have done fine in life for a challenged individual." For an autistic person, if they achieve something, or fail to acheive something, is it fair to qualify that with, "Well, that's ok for an autistic."

    Autism may well be a state of being, a genetic condition people are born with. That may well mean that autism IS NOT curable. But the issues that autistic people struggle with (not to say that all things that autism brings are negative) can be dealt with. It is a question of upbringing and ongoing understanding, perhaps, not a question of "killing the autism" with medication.

    Now there are two schools of thought in proviving treatment/education for the developmental issues of autism. One is TEACCH and one is ABA. TEACCH is far more broad and holistic and looks at the whole person and is not just one system so that it is harder to understand and implement. ABA is simplistic and invasive and apparently effective, but most therapies which are horribly invasive are effective, but at what cost.

    Let us say that an autistic person with sensory issues and needs learns to suppress those things and act normal but on the inside they are still suffering from sensory issues etc and are in constant discomfort but they are putting on the face of being normal. Then people around them would be happy but they would be miserable. This is what I feel ABA offers autistic people.

    I actually feel there are some elements of ABA that, because they are effective, may be integrated into a holistic teach system.

    The point is that being autistic may well be an ongoing life thing that must be accepted. It certainly affects a persons personality. To say to someone, "What you think and feel is not valid. It is a sickness. What you are a sickness," is a very hurtful thing. As I have said my life has been difficult but in the face of adversity I have achieved a lot and just generally survived. I try not to define myself by my negatives, although sometimes I do and that is very hurtful to me.

    By Anonymous Anonymous, at 1:50 AM  

  • Wade Rankin writ:
    "I realize I am opening up the central debate many of us have as to where autism ends and comorbidities begin, but I simply do not believe that a child has the civil right to refuse medical treatment his parents determine may be necessary (subject, of course, to considerations of safety, which opens up another debate I suppose)."

    A child has whatever civil rights are granted to him by the place where he lives, as I understand it. If a family from somewhere in Africa moves to the States and seeks out a surgeon to perform female genital mutilation on their daughter, supposing they could find a surgeon to do it, the daughter would have a legal right to refuse the surgery. Surely no normal hospital would allow it even if the parents thought it was very important to have it done.

    If a child wanted to be vaccinated and the parents were purely antivaccine, would the child have the right to be vaccinated? I don't know how the law reads there. Personally, I think the kid has the right to be vaccinated because I think the parents are out of their minds. This is not talking about people who have reason to suspect that the child will have a serious reaction to the vaccines, say the child is allergic to eggs.

    Generally, if a judge thinks that the parents are being wacky they'll step in and order the child to have whatever medical treatment seems to be necessary according to local standards. Or if the parents are feeding their child poison as part of a belief system the court would have the right to stop the parents from "treating" their child that way. Lets say the parents want to give their kids lots of Ayurvedic treatments containing lead and mercury. There was that little girl who died of AIDS who's mom didn't believe in HIV. I'd say she had the right to be treated by people who believed in HIV. She might still be alive today had the courts stepped in.

    But this has nothing to do with ABFH's point that a society that constantly sends the message to a group of young people that they are unwanted to their very core, is setting itself up to have a bunch of young people who are full of rage at the ones who told them that they were unwanted to their very core.

    Look at Baxter Berle. He's got a genetic disorder, literally written all over his face. But now he's been given a sham treatment, TD DMPS (and a whole bunch of other treatments including naltrexone to cure him of his autism AFTER the full-page ad in the NYT came out saying that he was already cured!) and he does NOT act normal on that video JB Handley posted to the EoHarm group. But everyone says he's all fixed. He isn't creepy and autistic like he was as a toddler. Besides that, the school he's in (The Learning Castle) is run by the Church of $cientology. This isn't a warning flag? Scientologists don't believe in autism. We don't know that the Berles are scientologists but one might think they were in agreement with that level of denial-ism, and that might drive them to deny how autisic he really is.

    By Anonymous Anonymous, at 4:11 AM  

  • ND;
    No thanks. Does your wife know you're a switch hitter?

    By Blogger John Best, at 11:35 AM  

  • Sigh. Foresam, you are definitely childish. Do you even have a wife?

    Anyway, this forum is about "Social Interaction and Cure". Why do you keep trying to drag it away from that?

    By Anonymous Anonymous, at 12:49 PM  

  • And FS I read my wife and friends all my posts. We are all laughing at you.

    By Anonymous Anonymous, at 12:51 PM  

  • Wade: I made the comparison between the two civil rights struggles because the attitudes of today's society toward autistics are not very different from the attitudes toward non-whites a century ago, when eugenicists claimed to have scientific proof that the brains of non-whites were inferior and defective.

    More on that in my next post.

    And yes, there are human rights issues raised whenever any medical treatment is undertaken for the purpose of making a child more socially acceptable, as an anonymous commenter already has pointed out.

    By Blogger abfh, at 1:10 PM  

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